Jump to content

We aren't the only ones who have a hard time finding support


[Fl...]

Recommended Posts

https://www.brainline.org/article/lost-found-what-brain-injury-survivors-want-you-know

 

I used to think that "if only I had a different medical issue, people would understand and support me" but after reading this article about the challenges that TBI victims face when seeking support I now realize that it is probably hard for anyone to find support when they have a condition that other people just don't understand.

 

On a side note- reading this article should leave little doubt that what we are suffering from is indeed a brain injury.

Link to comment
Share on other sites

Hi FG,

 

I used to think the same thing. Then I joined a support group for MS and see that they have the same struggles with people not believing them and supporting them in a helpful way. I joined because I saw on BB that many are diagnosed with MS in withdrawal in error.

 

I've also seen people discuss there challenges with Lyme's. Seems like all illness that are not visible to others are not taken seriously.

 

I had breast cancer 6-1/2 years ago, I had friends that offered practical support like doing my laundry for example, but they stopped before my 5 lbs. weight limit was lifted by my surgeon. I didn't have a washer / dryer where I lived, so I waited until my weight limit was 10 lbs. and I used my bathroom scale to weight laundry until the scale said 10 lbs. My point in sharing that is that it seems people are easily distracted even when recovery time is short.

 

Benzo withdrawal is a long process, most folks with good intentions just don't go the distance for one reason or another.

 

I think people in general do their "best" but at the end of the day illness in general is something we weather alone much of the way.

Love

 

Link to comment
Share on other sites

Yes, you are so right! We have brain injury from these drugs. It would be great public service if medical doctors would publish this information. Unfortunately Physicians need to understand this before the public can.
Link to comment
Share on other sites

[98...]

https://www.brainline.org/article/lost-found-what-brain-injury-survivors-want-you-know

I used to think that "if only I had a different medical issue, people would understand and support me" but after reading this article about the challenges that TBI victims face when seeking support I now realize that it is probably hard for anyone to find support when they have a condition that other people just don't understand.

On a side note- reading this article should leave little doubt that what we are suffering from is indeed a brain injury.

 

:thumbsup: :thumbsup: :thumbsup: 

I agree it is injury (  I Prefer the description damage or illness, all just words though    :D )

in some form or another it is more the level that  we all have which can be very very different.

Like we can injure/damage our skin with a paper cut, or have 70% of our skin burnt in an accident a skin injury/damage

Its the level of damage we each have received, which can be very very different in many cases, and takes

different approaches to deal with, hence the many and varied posts on BB often.

 

Hi FG,

I used to think the same thing. Then I joined a support group for MS and see that they have the same struggles with people not believing them and supporting them in a helpful way. I joined because I saw on BB that many are diagnosed with MS in withdrawal in error.

 

I've also seen people discuss there challenges with Lyme's. Seems like all illness that are not visible to others are not taken seriously.

I had breast cancer 6-1/2 years ago, I had friends that offered practical support like doing my laundry for example, but they stopped before my 5 lbs. weight limit was lifted by my surgeon. I didn't have a washer / dryer where I lived, so I waited until my weight limit was 10 lbs. and I used my bathroom scale to weight laundry until the scale said 10 lbs. My point in sharing that is that it seems people are easily distracted even when recovery time is short.

Benzo withdrawal is a long process, most folks with good intentions just don't go the distance for one reason or another.

I think people in general do their "best" but at the end of the day illness in general is something we weather alone much of the way.

 

 

:thumbsup: :thumbsup: :thumbsup:

Link to comment
Share on other sites

I think people in general do their "best" but at the end of the day illness in general is something we weather alone much of the way.

Love

 

I never expected people to provide unlimited support but I never could have imagined that support would be virtually non-existent for certain illnesses. Maybe it shouldn't have came as a surprise to me but I would have assumed that you wouldn't need notarized statements by three doctors confirming a diagnosis of a popular, recognizable disease in order to receive any kind of support.

 

I guess the real revelation is the fact that people can be made so sick for so many months or years on end by a supposedly "safe" prescription drug. If you have a hard time wrapping your head around the idea that that is possible it's going to be hard to show empathy for people that have experienced it.

Link to comment
Share on other sites

People with ME/CFS have had no support for decades and have often been abused by the medical profession. Dr Myhill is trying to get the authors of the PACE trial foe ME prosecuted.

 

I have had 22 years of disbelief and abuse from the medical profession and now this as well.

Link to comment
Share on other sites

[32...]

People with ME/CFS have had no support for decades and have often been abused by the medical profession. Dr Myhill is trying to get the authors of the PACE trial foe ME prosecuted.

 

I have had 22 years of disbelief and abuse from the medical profession and now this as well.

 

I had no idea about that. That's horrible. >:(

Link to comment
Share on other sites

This scares me to hear it's a brain injury.

 

You have to keep this in perspective. In most (all?) cases this is a functional brain injury, it isn't structural and the brain has the ability to heal itself. People with traumatic brain injuries can recover over time and all of the evidence points to the fact that recovery from benzos is likely, if not inevitable.

 

"Injury" is just a word. It doesn't mean this is permanent.

Link to comment
Share on other sites

[98...]

This scares me to hear it's a brain injury.

You have to keep this in perspective. In most (all?) cases this is a functional brain injury, it isn't structural and the brain has the ability to heal itself. People with traumatic brain injuries can recover over time and all of the evidence points to the fact that recovery from benzos is likely, if not inevitable.

"Injury" is just a word. It doesn't mean this is permanent.

 

:thumbsup: :thumbsup:  :thumbsup:

Link to comment
Share on other sites

People with ME/CFS have had no support for decades and have often been abused by the medical profession. Dr Myhill is trying to get the authors of the PACE trial foe ME prosecuted.

 

I have had 22 years of disbelief and abuse from the medical profession and now this as well.

 

I had no idea about that. That's horrible. >:(

 

Yes and Prof Simon Wessely was one of the reasons research has not been done,  he is also behind antidepressant cover-up in UK.  He is an odious man, a narcissist.  I bet he will weasel out of the PACE trial investigation. His support is diminishing.  The treatment of ME patients has been utterly despicable.  I follow their campaign along with many other campaigns.

 

Patients are on Twitter every day. Feeling alone, abandoned. Benzo withdrawal is nothing unique.

Link to comment
Share on other sites

OK, thanks for the clarification.  I understand better now.

 

 

This scares me to hear it's a brain injury.

 

You have to keep this in perspective. In most (all?) cases this is a functional brain injury, it isn't structural and the brain has the ability to heal itself. People with traumatic brain injuries can recover over time and all of the evidence points to the fact that recovery from benzos is likely, if not inevitable.

 

"Injury" is just a word. It doesn't mean this is permanent.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...